The Lynch Syndrome community comes together to advance research
Updated: Nov 15, 2018
AliveAndKickn’s new HEROIC Mosaic Research Community, an online crowdsourcing approach to design research studies, has been chosen as a Commitment to progress by the Biden Cancer Initiative.
In 2016, AliveAndKickn launched the HEROIC Registry, a patient driven registry to collect real world and genomic data on Lynch syndrome patients globally. To build upon that success, AliveAndKickn is now partnering with the University of California San Francisco (UCSF) to launch The HEROIC Mosaic Research Community, a novel research opportunity for our community to collaborate with families, supporters, and top Lynch syndrome researchers to create new research projects that address Lynch Syndrome questions most important to the patients.
Mosaic is an online crowdsourcing approach to design research studies. Instead of researchers designing and implementing studies, Mosaic allows patients, researchers, and community members to collaborate online in writing a research protocol and conducting the research. We encourage everyone to join Mosaic and have your voice in research.
With a stellar line up of internationally recognized Lynch syndrome researchers on board, this project was chosen among many to be part of the Biden Cancer Initiative’s Commitment to progress. It will be featured at the Biden Cancer Summit on September 21st. Vice President Joe Biden said: “We are at an inflection point in the understanding and treatment of cancer and are starting to break down barriers and change the culture in ways that are needed to deliver what patients deserve – a cancer research and care system that puts saving lives above all else. The commitments we have received, including The HEROIC Mosaic Research Community, bring us closer to developing the right systems, the right culture to get us there.”
“We are thrilled to have the opportunity to connect the community in a novel and forward-thinking way that will advance research that is important to the patients,” adds Robin Dubin, executive director of AliveAndKickn. “We are honored that the Biden Cancer Initiative has chosen our Commitment to be an integral part of the Biden Cancer Summit and their efforts to double the rate of progress against cancer. Through BCIs efforts we can amplify the message to the Lynch syndrome community and beyond about this incredibly important initiative.”